Friday, January 30, 2015

RTI reveals lack of Disability-inclusive Disaster Management in India

RTI reveals lack of Disability-inclusive Disaster Management in India

The results of the first-ever UN global survey 2013 of persons living with disabilities on how they cope with disasters reveals a disproportionate number suffer and die in disasters because their needs are ignored and neglected. They are often left totally reliant on the kindness of family, friends and neighbours for their survival and safety. Just 17% of respondents were aware of a disaster management plan in their city/town/ community and just 14% said they had been consulted on it. At the same time, 50% of respondents expressed a wish to participate in community disaster management.

India experienced 155 natural disasters in last 10 years
PwDs mortality rate is two times higher than general population in disasters
Blind cannot read the written message on the wall of evacuation shelters.
Disabled people are real experts on matters pertaining to disability.
Sirens alerting evacuation cannot reach to Deaf
Disasters create a new generation of PwDs.
DiDRR also helps elderly, small children, & foreigners who speak different languages.
International obligations
Key features of Disability inclusive Disaster Risk Reduction
UN Convention on the Rights of PwD
Empowerment & Participation of PwDs
House mapping of PwD with emergency management
Rio20+ SDGs
Universal Design
Mobile text message
Hyogo  Framework  for  Action 2 
Inclusive early-warning systems & priority evacuation assistance
Indian Army used Twitter in JK floods
Sendai statement
Portable solar battery
Yogyakarta Declaration
Coordination & collaboration
Manual electric generator

Yogyakarta Declaration 2012 stated that there is an urgent need to embrace the issue of disability as a crosscutting core theme within mainstream Disaster Risk Reduction (DRR) strategies and to include persons with disabilities within planning and response.

Sendai Statement on DiDRR
More recently, one of the core message of Sendai Statement (Apr 2014) “was engaging, on an equitable basis, girls and boys and women and men with disabilities, and their organizations, in all phases of DRR and in decision-making processes are prerequisites for everyone’s meaningful participation.”

Persons with disabilities, the world’s largest minority, are the first to be forgotten and the last to be remembered of all the marginalized groups in case of a disaster in India. An earlier report in Times of India (No policy to rescue disabled during emergency) based on the RTI filed by Abha Khetarpal highlighted the unpreparedness of National Institute of Disaster Management (NIDM) and my recent RTI reconfirms the fact. Disability inclusive Disaster Risk Reduction (DiDRR) must be considered as a matter of human rights.

In my RTI, I asked NIDM the action taken on the previous TOI story. NIDM’s response was that “they are not yet directly involved except preparing TOT module for disabled person. However, the NIDM website states its mission as “to work as a think tank for the Government by providing assistance in policy formulation.” On asking about the details of all the disability organizations or PwDs consulted while preparing training modules on disaster management, authorities referred to NIDM website which doesnot have any list. NIDM did conduct few drills at blind schools but nothing at inclusive schools. NIDM is also in preparation of a 5 day TOT on “Personnel dealing with disabled people in disaster” but how much input comes from the real stakeholders-the disabled persons, remains to be seen. 

Dr Satendra Singh's RTI
Cross the Hurdles, the disability NGO by Ms Khetarpal met NIDM executive director in November to show their disaster management mobile app. Despite disabled people coming forward, the annual training calendar of NIDM till March 2015 has 86 national TOT courses without a single one on DiDRR. (

The National progress report on the implementation of the Hyogo Framework for Action on DRR (2013-2015) was prepared by Ministry of Home Affairs in Oct 2014 and it did not have DiDRR mentioned anywhere despite India ratifying UNCRPD.  The ‘future outlook’ statement in the report too remained conspicuous by the absence of DiDRR. 

The  Hyogo  Framework  for  Action 2  (HfA2) is  expected  to be updated in 2015 at the Third World Conference on DRR in March 2015. As a prequel to it many countries and organizations included disability in their discussions and action work. I asked NIDM in the RTI on the details of any sensitization program done on DiDRR on International Day of Disaster Reduction (13 Oct 2014). Their standard reply to this question was that NIDM celebrates Disaster Reduction Day every year in 2nd week of October. One of the subtheme of International Day of Persons with Disabilities in 2014 was ‘DRR and emergency responses’. On asking measures taken to celebrate the day in line with the theme, NIDM was silent. “Ironically, last year in the Post HFA Consultation in India, people debated extensively on integrating HFA into suitable UN Conventions but the actual neglect of Article 11 of UNCRPD is for everybody to see. Things are looking only on paper at present. On asking details of all the changes done in accordance with UNCRPD in National Policy of Disaster Management and National Plan of Disaster Management, NIDM replied that the National Policy of Disaster Management can be downloaded from their website.

“Last year too, a multi-stakeholder National Platform for Disaster Risk Reduction was constituted in February 2013 which brought together the whole range of stakeholders from Government, Parliamentarians, Mayors, Media, International Organisations, NGOs, local community representatives, scientific and academic institutions and corporate businesses etc but not MSJE or Disabled organizations or people with disabilities. No wonder DiDRR was never a part of the proceedings.” Said Ms Khetarpal  (Government's Resolution No.47-31/2012-DM-III dated 26th February 2013.)

Stuck in Hudhud cyclone. Pic: Sai Padma
Prime Minister Modi (Also chairperson of National Disaster Management Authority) saluted the spirit of disabled persons, calling them 'heroes’ on International Day of Persons with Disabilities (3 Dec 2014) day. However these ‘heroes’ may become ‘disabled’ in disasters because of disability exclusive disaster management. Sai Padma, founder of Gobal-Aid and a wheel chair user was stuck in her house for 20 days as a tree fell at their entrance in the recent Hud Hud cyclone at Vizag.  

Hudhud cyclone trapped Sai Padma, a disability activist in her own house
Being a doctor as well as a person with disability, I have seen mismatch in emergency care services. The rescue helpline numbers cannot be accessed by Deaf or those having speech impairment. To rub salts on the wounds, different cities have different numbers. The larger point which we are missing is that #DiDRR is beneficial not only for PwDs but also for elderly citizens, small children, & foreigners who speak different languages. The earlier it comes on the radar of Indian Government, the better it is. The sad part is that people with disabilities are themselves coming forward to provide solutions but there are no takers.

Dr Satendra Singh

Tuesday, January 13, 2015

Shankar's film 'I' ridiculing disability on the pretext of creativity

Cinema and cricket capture the imagination in this country. Sadly, the majority of cricket stadiums are not accessible and the majority of the films ridicule disability. Cinema is also responsible for perpetuating stereotypes and more often than not people with disabilities are at the receiving end. Disability is portrayed as a negative character and there is hardly a Bollywood film where a person with a disability himself has portrayed any significant character. Often, non-disabled portray disabled characters without understanding the disability. If this was not sufficient, top directors dish out humiliating experiences in the form of creativity. The latest to join this infamous list is, unfortunately, India’s most seasoned director.

The teaser of Tum todo na song in Shankar’s magnum opus ‘I’ begins on a promising note but gradually turns into disbelief for me and later unacceptable. The song portrays the beauty and the beast concept but what hurts me was the projection of werewolves as disabled beasts. The protagonist Vikram is portrayed as a werewolf and a grotesque avatar of Hunchback of Notre Dame. Standing behind him in the song are werewolves as the beasts with spinal curvatures and holding wooden crutches. As this dehumanizing song was not sufficient, the film has Vikram in another character Koonan where he is shown as a pitiable and pathetic stereotype with huge growths on his face and scoliosis. Shankar, the director himself tweeted a photograph stating “With one of my favorite #I hunchback standees”.  ​Is Shankar not aware that words and negative cinematic portrayal do have the power to hurt​?​

In the six months after Disney's Hunchback of Notre Dame was released in the UK, disabled people reported the word 'hunchback', which had gone out of use, was being used in a derogatory way towards them. The British Scoliosis Society wrote to the then Minister of Disabled People complaining that since the film came out there had been more than a hundred attacks on people with scoliosis.
Pepin le Bossu (767-811) had kyphosis since birth and medieval historians gave him the epithet “hunchback.” Many medieval people probably believed that physical deformation or disability was an outward manifestation of spiritual corruption, a position that was partially informed by passages from the Bible- disability is seen as a punishment from God (Chapter 9, Book of Leviticus, Chapter 21).
Richard III, who ruled England from 1483 to 1485, had adolescent idiopathic scoliosis. Shakespeare called him a ‘hunchback’ and described the king as a “poisonous bunch-backed toad” in his 1593 play. English poet Alexander Pope had severe rachitic kyphoscoliosis along with tuberculosis of spine (later termed as Pott’s spine). His rival poets bullied him by calling “hump-backed toad.” 

The Disney Films, unfortunately, continued the tradition of reinforcing negative stereotypes of disability. In the 1998 animated ‘The Hunchback of Notre Dame’, Disney chose to have Esmeralda go off with the non-disabled Phoebus rather than the disabled, Quasimodo, who loves her. Similarly, in the earlier film “Beauty and the Beast”, in the climax the beast transforms back into a handsome human totally contradicting the film’s supposed message of “looks don’t matter.” The teaser of Tum todo na also shows the same.

The stereotypes about Quasimodo’s disability were reinforced again and again in subsequent filming of ‘The Hunchback of  Notre Dame’. In fact, the original title of the novel by Victor Hugo was Notre Dame de Paris. 

The Hunchback part was added when the book was translated into English. Shankar continued to use the derogatory term in his interviews and on social media. In contrast, Oddsocks Productions, a British theatre company dropped the word “hunchback” from its stage adaptation of the classic novel and named it The Bellringer of Notre Dame. The difference was that these people consulted disability advisors and then dropped the word. I doubt if Shankar had approached anyone from the disability sector.
That reminds me of Shankar’s previous classic Nayak featuring my favorite Anil Kapoor. In one of the scenes, a crawling disabled youth honors Anil Kapoor with a garland and requests to stand for elections saying, “My country has become lame like me. Make it walk.” That scene struck very well in the context of the film and even the protagonist Anil Kapoor vows to fight the elections in the film. On the contrary, it reinforced the stereotype that disabled people cannot contribute to growth. Does “Make it walk” means that a disabled person cannot contribute to nation-building?

The negative images of disability in these media, although false, have become so familiar that people believe they show the reality of disabled people's lives. The non-disabled audience accepts unquestioningly these false images because it is more comfortable to do so than to face their deep-seated fear of difference. Jenny Morris argues in Pride Against Prejudice, “If we do not 'appear' as real people, with the need for love, affection, friendship and the right to a good quality of life, how can non-disabled people give any meaning to our lives?" 

Anyone can, at any time, become disabled, or develop a physical or mental impairment. Vikram, who is playing the character having spinal curvature, met his wife for the first time when he was in crutches, following three years of his hospital stay. The filmmakers and the actors should be aware of the sensitive issue since ignorance is no excuse. There is an awful stigma attached to scoliosis and it can lead to bullying, discrimination, and adverse psychological problems.

Medical impairments like congenital porphyria (photosensitivity, reddish teeth, & psychosis), hypertrichosis (excessive facial growth), scoliosis/kyphosis/lordosis (curvature of the spine), ​and ​Pott’s spine (tuberculosis of spine leading to bony deformity) may lead to some of the features traditionally associated with werewolves. The derogatory hunchback word has become so thoroughly associated with evil characters that it is totally unacceptable. Spinal curvature is the preferred terminology if you ask us, the people with disabilities.

Developmental disorders, degenerative diseases like arthritis, osteoporosis, compression fractures all these can lead to spinal curvature which can happen to anyone. Disability is diversity. Just like the DNA of the crew members of film ‘I’ is not same similarly anybody in ​this world can have a posterior convex angulation (kyphosis), anterior convex angulation (lordosis), or lateral curvature (scoliosis) of the spine. Being a doctor with a disability, I know and would like to tell all that a small degree of both kyphotic and lordotic curvature is considered ‘normal’. Not only disabled but elderly people also and people in plasters use crutches (Vikram used too) so it was dehumanizing to equate assistive devices with beasts in the song.

My initial reaction was disbelief that the world-renowned director has portrayed disabled in such a spirit. My knee jerk reaction was 3 tweets to him and in one of those, I said that I am proud to use a crutch and NOT ashamed of knowing people having kyphosis or scoliosis. No wonder the great director blocked me on Twitter.

The Cinematograph Act, 1952 under section 5B(2) states that the "Central Board of Film Certification shall ensure that scenes showing abuse or ridicule of physically and mentally handicapped persons [2(iii)b) and scenes that may have the effect of de-sensitizing or de-humanizing people are not shown [2(iv)]."

Can a person with spinal curvature or a person using crutch see this film in a cinema hall? Will he not be ridiculed as we all know how disabled are treated in our country? As feared, even media has started using the derogatory hunchback word popularized by Shankar. Creativity doesn’t give anyone be it Shankar or Weta Digital any right to ridicule disability. I appeal to directors to refrain from depicting us as objects of curiosity. Make us ordinary. Our impairments should not be ridiculed or made the butt of jokes.

The opening song in Disney movie asks listeners to judge for themselves “who is the monster, who is the man.” The same can be asked from Shankar. No doubt he has captured our imaginations with his previous films. But here, his filming of the song Tum todo na reminds me of another song ‘Dil mera churaya kyun, jab ye dil todna hi tha’.

The disabled character Quasimodo originates from Latin words "quasi" and "modo" also mean "almost" and "the standard measure" respectively. As such, Quasimodo is "almost the standard measure" of a human being. The measure should be empathy and compassion (as shown by Quasimodo’s love for Esmeralda) and not disability. The use of crutches to equate beasts with disable was totally unwarranted.

I take pride in using crutches & will continue to use them.
I accept disability as diversity.
I respect people with spinal curvatures.  
I wish 'I' a good business.
I plead film reviewers not to use 'hunchback word' while reporting about 'I'.
I may not watch 'I' but I assure Shankar to watch his future films if they are non-discriminatory.
I expect more sensitivity from Indian cinema on disability issues.
I further hope that Indian cinema won't feign disability and use people with disabilities to showcase their experiences.

Dr. Satendra Singh
(A doctor with a disability at UCMS & GTB Hospital, Delhi, and founder of a group 'Infinite Ability' promoting creativity and disability. I use crutches and not ashamed of that.)